Newsletter May/June 2023

UPCOMING EVENTS

July 19, 2023
7:00 to 8:00 PM
Sip & Chat

July 22, 2023
World Fragile X Day

July 22, 2023
8 AM to 5 PM
Fragile X Family Conference

July 23, 2023
3 to 5 PM
Xtraordinary Bowl-a-Thon

July 31, 2023
2 to 4 PM
Community Conversation w/ DHHS' Benton & Crosbie

October 7, 2023
11 AM to 4 PM
Family & Friends Fragile X Picnic

Community Conversation & Ice Cream Social

DHHS’ Benton and Crosbie Headline Fragile X Awareness Month

FX_Awareness_Month

Fragile X Awareness Month is full of exciting events including the first statewide Sip & Chat, the Xtraordinary Bowl-A-Thon, and the 2023 Fragile X Family Conference, plus Governor Roy Cooper will proclaim Saturday, July 22 as Fragile X Awareness Day across North Carolina.

Fragile X Awareness Month will culminate with Mark Benton, Chief Deputy Secretary of Health, DHHS, and Kelly Crosbie, Director, Div. of Mental Health, Development Disabilities and Substance Use Services participating in a community listening session with families impacted by Fragile X Syndrome.

The Community Conversation/Ice Cream Social will be held on Monday, July 31, 2023 and will be live-streamed statewide so everyone can participate. With the expansion of Medicaid, North Carolina’s new 1915(i) option and tailored care being introduced in October, there are so many questions in the Fragile X and disability communities that this conversation is very timely.

The conversation with Chief Deputy Secretary Benton and Director Crosbie will begin at 2:00 PM and the Fragile X community is invited to attend in person or view online. Look for the location and registration details in future emails from the NC Fragile X Foundation.

Register Today! Bowl-a-Thon – Sunday, July 23

NC Fragile X Bowl-a-Thon logo

Celebrating National Fragile X Awareness Day, the NC Fragile X Foundation is hosting an Xtraordinary Fragile X Bowl-a-Thon on Sunday, July 23 from 3:00 PM to 5 PM at Rainbow Lanes Family Fun Center, 850 NC-42, Clayton, NC.

Everyone is encouraged to form a team with families and friends to raise funds for the Foundation and to compete for the coveted Bowl-a-Thon championship trophy! T-Shirt orders and Advance registration are encouraged. Sign up here.

Includes Support Services & Long-term Care

Improving Access and Funding for Medical and Mental Health Services

Governor Cooper’s administration and the State Legislature have taken great strides in improving access to affordable healthcare services to people with intellectual and developmental disabilities (I/DD) as well as the traditionally uninsured population of the state. Three new programs offer real hope for improved access, funding and delivery of medical and mental health services including:

  • Medicaid Expansion – Set to become law with the passage of the new state budget, Medicaid will be expanded to provide healthcare insurance coverage and provide better access to care for people with disabilities, including Fragile X, and low-income families across the state. People with I/DD require wide-ranging and costly healthcare needs that will be covered by Medicaid in the immediate future. The expanded coverage offers affordable health insurance for complex behavior health and mental health services that are critical to people with disabilities and low-income families especially in the state’s rural areas. Beginning October 1, many of the Medicaid recipients will begin receiving coordinated and synchronized healthcare services and supports from a broad range of specialists and providers managed by a single care manager.
  • Tailored Plan Management – Set to be launched in October, this is a Medicaid service option that provides a designated Care Manager who manages a network of resources and supports to achieve better health and quality of life outcomes for Medicaid recipients. The new delivery model provides individualized and coordinated care for people living with intellectual and developmental disabilities (including Fragile X), mental illness, substance use disorders or traumatic brain injuries. Tailored Plans reach beyond standard Medicaid plans to provide critical therapies and services needed by these specific groups of people. The program administered by the LME/MCOs who serve different sections of the state (See next article for details). If you are eligible or you or a dependent have a tailored plan, you will get a notice in the mail from your LME/MCO. To learn more, visit https://ncmedicaidplans.gov/learn/benefits-and-services/tailored-plan-services
  • 1915 (i) State Plan Option – A new 1915 (i) Medicaid option provides home and community-based services for qualifying individuals with I/DD, significant behavioral health needs and for those requiring acute-care medical services like dental services, skilled nursing services and long-term services. This includes respite, supported employment and environmental modifications in home and community-based settings. This program combines existing individual support and transitional living services into a person-centered, tailored plan for children ages 3 to 20 with severe SUD, diagnosed children residing in therapeutic foster care or other accommodation at risk of losing their placement and adults with traumatic brain injuries. Services will be provided by local management entities/managed care organizations (LME/MCOs) and are also available through Tailored Plans, NC Medicaid Direct, the Children and Families Specialty Plan and the Tribal Option for beneficiaries who qualify. For more information, go to https://www.medicaid.gov/medicaid/home-community-based-services/home-community-based-services-authorities/home-community-based-services-1915i/index.html

The combination of these three programs will make more healthcare and support services available to families and individuals with disabilities. You may want to thank your State Legislature and the Governor for their support of these new programs.

How to Apply for NC Medicaid

Get to Know Your LME/MCO

The expanded NC Medicaid offers affordable healthcare coverage to those age 65 or older, blind or with disabilities, children under age 2, pregnant women, low-income individuals and families and those in need of long-term care.

Many of these new services will be provided through a network of Local Management Entity/Managed Care Organizations (LME/MCOs), each one serving specific counties across the state.

FREE & Online

A Fragile X Learning Opportunity

Cincinnati_FX_Conference

You are encouraged to sign up by July 17.

Cincinnati Children's Hospital is offering a FREE, one-day 2023 Fragile X Family Conference on Saturday, July 22, 2023 from 8 AM to 5 PM.  Attendance is completely free for both in person and online attendees.  Experts will be speak on the latest research and treatments, practical skills for different life stages, behaviors,  interventions, self-advocacy, premutation carriers, and Fragile X community positivity. Interested? Click the button for more info or to register.

Cooper Proclaims Fragile X Awareness Day!

Governor Roy Cooper

Governor Roy Cooper has proclaimed Saturday, July 22 as Fragile X Awareness Day across North Carolina as part of both National Fragile X Awareness Day and Fragile X Awareness Month. July is filled with events here in North Carolina and across the country to distribute educational information and raise awareness of Fragile X and its genetic complexities.

Sip & Chat – Can We Talk?

NCFXF_Sip&Chat_Logo

Please register in advance for the event and you will receive a link to the
Zoom meeting.

A group of volunteers is organizing a statewide monthly Sip & Chat using Zoom (it’s pretty easy) that is kicking off on Wednesday, July 19 from 7 to 8 PM. As a Fragile X parent, you are welcome to join the call - no agenda, no pressure, just whatever is on your mind. This is an Xtraordinary opportunity to connect with other parents to discuss topics of interest such as – Ugh! It’s summer; what to do with the kids; IEP planning; what waiting list?, etc. Mark your calendar for the 3rd Wednesday of every month from 7 to 8 PM. If the calls get too large and impersonal, we plan to establish other calls so everyone feels welcome and has a chance to talk.

Former DHHS Secretary Cohen To Head CDC

New CDC Director Mandy Cohen

Former DHHS Secretary Mandy Cohen, who led North Carolina through the COVID-19 Pandemic during her tenure as secretary, has been picked by the Biden administration to serve as the director of the Center for Disease Control (CDC) in Atlanta. She is best known in the disability community for actively supporting and promoting NCCDD’s EveryBody Works campaign and her support of disability related issues. The Foundation wishes her well in her new role at CDC.

NC Fragile X Foundation Family & Friends Picnic logo

Saturday, October 7, 2023
11:00 AM to 4:00 PM

Rain or Shine!
Lake Mackintosh Park Club House

Burlington, NC 27215

Save the Date! 2023 Family & Friends Fragile X Picnic

The NC Fragile X Foundation Board is pleased to host our annual Family & Friends Picnic. We look forward to seeing familiar and new faces! Join us for a day to reunite and gather with our NC Fragile X community!

  • Catered BBQ Lunch (Vegetarian & kid-friendly options)
  • Scenic and Peaceful Location on the Lake
  • Friendly Faces, both Familiar and New
  • NCFXF Olympic Games!

Watch for registration information coming soon!

Board Meeting Date Change

To accommodate the holidays for our volunteer board members, the December Board meeting will be held on Saturday, December 2, 2023 (beginning at 9 AM. Anyone interested is welcome to attend quarterly Foundation board meetings in person (921 Morreene Rd, Durham, NC 27705) or online at https://fragilexboardmeetingszoomlink. (Meeting ID: 930 3021 8861 Passcode: 914028). Meetings for the rest of 2023 include:

  • September 9, 2023, 9:00 AM
  • December 2, 2023, 9:00 AM